Day 22/23: One Less Tube... Not in a "Good Way"

Ashley here on the Mid Watch Hour.

Well it finally happened... a critical tube came out around 2:00am this morning and it was not on purpose. His feeding tube came out of his stomach while his bedding was being changed. When he is sleeping he doesn't tell us that he needs to use the bathroom. They were changing his sheets and we believe that while he was rolling over to one side the tube came out of his stomach. (No one knows for sure if that is what happened but that is the best guess we have) His arms were tied to the side of the beds to prevent him from pulling out his trach. His abdominal wrap (A big white spandex wrap that goes around the torso and velcro's together on the opposite side) was also on at the time so there was no easy way to get at the tube. They cleaned him up and finished changing the sheets and they covered the hole with some gauze.

They made sure it wasn't bleeding and listened to his stomach sounds to make sure there wasn't any leaking into the stomach cavity. Apparently when they are done with the feeding tube they don't surgically take it out or suture the hole. So he isn't in any danger right now. They are going to wait until the doctor sees him tomorrow to decide what to do about it. Since the accident he had lost almost 30 pounds but as of today they said he was up 7 pounds. They had planned on keeping his feeding tube in and using it at night to supplement his eating from during the day. Since he has been eating his meals so well the last few days there is a chance that they will leave the feeding tube out and keep a close eye on his diet. They would add in high calorie protein drinks to help supplement what he is lacking. 

If he does need the tube put back in they will have to send him to the OR to do it. Since he does have a long way to go in gaining all his weight back there is a chance that this might happen. It breaks my heart to know that he might have to go back to the OR. I do however want the best for him so it should be interesting to see what they say in the morning.

I don't know if it's the fact that it is the middle of the night when most of us should be sleeping but I want you to pretend for a minute that you are in Scott's position. Imagine you are waking up from a very deep sleep and you can't quite wake yourself up all the way. I know that most of us have experienced something like that before. Now add on to that confusion by suddenly having a hole in your neck and in your stomach. These holes have tubes sticking out of them. Your initial reaction would be to get those thing off that are bugging you. Unfortunately when you try to move you find that your hands are tie down. You struggle to get free but you can't.You start to panic because you realize your right side of your body isn't responding to your commands. Your eyes are trying to adjust and see what is going on but you can only see with your left eye. The voices around you are familiar but you can't understand why they aren't helping you out of this horrible experience. They keep telling you to "calm down" and to "lay back down." They explain that you have been in an accident and that you are in the hospital. You slowly start to remember where you are and why you are in the position you are in.

Now imagine going through that same nightmare 50 time every night. Unfortunately this is not a nightmare that can be shrugged off and forgot about in the morning... this is Scott's reality. It's painful to be the one to watch him struggle and fight with his restraints as he begs me to take them off. They did allow me to take is left arm restraint off as long as I sit next to him all night. So here we are, Scott is sleeping peacefully right now but in 5 minutes, 10 minutes, or even 15 minutes he will wake-up again to relive his new reality. I will be here to explain it to him... as well as to remind myself that this is in fact our new reality. It's not a dream. But even through all of this I have yet to hear Scott complain.

I know that this road is going to be a long one. The life that Scott and I once dreamed of is now going to be a different kind of dream. It's going to be one of small daily victories, of living in the present and having hope for the future. It's going to be a special life where we count our blessing more readily. As I was talking with my brother tonight I mentioned to him that I never thought a good day would be considered one in which my husband simply rolled over, or held my hand. We continue to see daily miracles and tender mercies from Heaven.

We have seen the strength of family bonds grow and true friendships flourish. We have met people along this journey who didn't know us before but have offered us their hands and hearts. We are surrounded by wonderful people. There is so much good in the world!!

Remember to thank God for the things that you have been given. Including those things we don't always see as blessings.

As we were being assigned to a room here at Barrows we were told we would be given a room of our own. (Some of the rooms here are shared by another patient.) They kept mentioning that because we had been at Select (or any LTAC) that we would get our own room. I thought that it must have been something to do with insurance. Finally Patti asked why being at Select would insure us of having our own room here. Truth be told... we are considered "contaminated." I believe Patti might have mentioned this in an earlier post.

Instantly a quote from "The Hiding Place" A story about the Holocaust entered my mind. I want to share that part of the story with you. A brief preface... Corrie Ten Boom, her sister Betsie, and other family members were Christians, imprisoned by the Nazis for hiding Jews in their home in Holland. Their story is told in a book called The Hiding Place. Their relationship with God proved to be a great benefit to themselves and to other women imprisoned with them. Corrie and her sister had just been reassigned to Ravensbruck (one of the worst concentration camps) As they were entering their new living space this is the conversation they had.

"'Fleas!' I cried. 'Betsie, the place is swarming with them!'

"We scrambled across the intervening platforms, heads low to avoid another bump, dropped down to the aisle and hedged our way to a patch of light.

"'Here! And here another one!' I wailed. 'Betsie, how can we live in such a place!'

"'Show us. Show us how.' It was said so matter of factly it took me a second to realize she was praying. More and more the distinction between prayer and the rest of life seemed to be vanishing for Betsie.

"'Corrie!' she said excitedly. 'He's given us the answer! Before we asked, as He always does! In the Bible this morning. Where was it? Read that part again!'

"I glanced down the long dim aisle to make sure no guard was in sight, then drew the Bible from its pouch. 'It was in First Thessalonians,' I said. We were on our third complete reading of the New Testament since leaving Scheveningen.

"In the feeble light I turned the pages. 'Here it is: "Comfort the frightened, help the weak, be patient with everyone. See that none of you repays evil for evil, but always seek to do good to one another and to all...'" It seemed written expressly to Ravensbruck.

"'Go on,' said Betsie. 'That wasn't all.'

"'Oh yes:'..."Rejoice always, pray constantly, give thanks in all circumstances; for this is the will of God in Christ Jesus.'"

"'That's it, Corrie! That's His answer. "Give thanks in all circumstances!" That's what we can do. We can start right now to thank God for every single thing about this new barracks!' I stared at her; then around me at the dark, foul-aired room.

"'Such as?' I said.

"'Such as being assigned here together.'

"I bit my lip. 'Oh yes, Lord Jesus!'

"'Such as what you're holding in your hands.' I looked down at the Bible.

"'Yes! Thank You, dear Lord, that there was no inspection when we entered here! Thank You for all these women, here in this room, who will meet You in these pages.'

"'Yes,' said Betsie, 'Thank You for the very crowding here. Since we're packed so close, that many more will hear!' She looked at me expectantly. 'Corrie!' she prodded.

"'Oh, all right. Thank You for the jammed, crammed, stuffed, packed suffocating crowds.'

"'Thank You,' Betsie went on serenely, 'for the fleas and for--'

"The fleas! This was too much. 'Betsie, there's no way even God can make me grateful for a flea.'

"'Give thanks in all circumstances,' she quoted. It doesn't say, 'in pleasant circumstances.' Fleas are part of this place where God has put us.

"And so we stood between tiers of bunks and gave thanks for fleas. But this time I was sure Betsie was wrong."

"One evening I got back to the barracks late from a wood-gathering foray outside the walls. A light snow lay on the ground and it was hard to find the sticks and twigs with which a small stove was kept going in each room. Betsie was waiting for me, as always, so that we could wait through the food line together. Her eyes were twinkling.

"'You're looking extraordinarily pleased with yourself,' I told her.

"'You know, we've never understood why we had so much freedom in the big room,' she said. 'Well--I've found out.'

"That afternoon, she said, there'd been confusion in her knitting group about sock sizes and they'd asked the supervisor to come and settle it.

"But she wouldn't. She wouldn't step through the door and neither would the guards. And you know why?"

"Betsie could not keep the triumph from her voice: 'Because of the fleas! That's what she said, "That place is crawling with fleas!'"

"My mind rushed back to our first hour in this place. I remembered Betsie's bowed head, remembered her thanks to God for creatures I could see no use for."

Now I am not saying we picked up "fleas" when we went to Select but I did have feeling of frustration and anger when we were there. I said some not so nice things about the place. Now I look back and realize what some of the "fleas" did for us. Now I am going to try and work on thanking God for the unforeseen blessings and frustrations we run into. 

I hope that I can have the faith like Corrie and Betsie. 

It's now 5:30 am... A start of a new hopeful day!!

Love you all,

Ashley